Suffolk Lupus Support Group
Meeting Notes
Date:
Venue:
Time:
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27 May 2012
Cedars Hotel, Stowmarket
1400
The meeting was opened by Bob Hale, Suffolk Lupus Support Group
Volunteer Coordinator.
Apologies were from:
o Margaret Warren
o Dawn Broughton
o A. Speedle
o Johanna Fusfield
Bob mentioned that he was also notified that one member, Geraldine Leonard
sadly passed away, and our condolences are with the relatives.
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The minutes of the last meeting on 22 Jan 2012 were reviewed and approved.
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Group Business:
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The following positions were put forward to the group
Newsletter
Fund raising
Web Site
Social Activities
Terry Hunt has kindly volunteered to manage the newsletter for the group. Contact
information will be distributed in due course for members to contribute articles.
Fund Raising and Social Activates contacts are still being determined. If any
member is interested, please contact Bob Hale in the first instance.
Bob has volunteered to attempt to develop the web site for the group. As there is
limited experience in this field, this may take some time.
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E-mails – Bob circulated a release form to members so they could agree to let
Bob have their contact points and use them for official business. The group
also pointed out that by using the BCC field in the e-mail TO field, and then
individual members will not see other member’s addresses. Bob will test this
in the next few days to confirm the functionality.
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Group Meetings – It was agreed to have two yearly county meetings and two
regional subgroup (east/west) meetings for the group.
o It was agreed that the central point in Stowmarket was a suitable
meeting point for the county, so the Cedars Hotel will be the venue for
future meetings. These meetings will be on the 3rd Sunday of March
and September.
o Bob informed the group he has investigated the Wyevale Garden
Centres as possible meeting sites for the regional sub groups/coffee
mornings. The centres are in Bury St Edmunds and Woodbridge. It
was agreed theses meeting will be held in April and October.
However, to maintain the impetus of the meetings, it was agreed to
organise a sub group meeting in June/July. More to follow on this.
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Demographics – Bob showed the spread of Lupus UK registered people in
Suffolk. The 85 people registered are centred on Bury and Ipswich.
AGM Feedback
Terry Hunt gave an excellent brief on the AGM recently held in Cardiff, hosted by the
South Wales group. He highlighted the presentations by Dr Hassam that dealt with
the diagnosis and genetic details of Lupus. Also discussed were the range of
symptoms universally agreed to diagnosis Lupus and that there is discussion that the
four of seven symptoms is not always accurate. Fewer symptoms may also indicate
the presence of the condition.
The presentation by Sara Chronic highlighted how they are training the trainer to
help patients with long-term conditions. This is similar to the Expert Patient
Programme.
Finally, Chris Lovell, a dermatologist from the Royal United Hospital gave an
entertaining presentation on the dermatological effects of Lupus and the benefits and
pitfalls of sun block, particularly the variance in protection factors.
Finally, the AGM business included a new section to the constitution to incorporate
groups such as ours, which are not formal independent groups.
There was also discussion on the NICE refusal to approve Belimumab, and the
appeal Lupus UK is submitting. Terry also mentioned that Hydroxychloroquine or
trade name Plaquenil is now off licence, so other variations of the medicine may be
coming on market.
He also mentioned that Mycophenolate (Cellcept) has been taken off the prescribing
funding list.
The next AGM will be in Chester on May 12 2013.
Guest Speaker
Sharon Jarrett, Commissioning Manager for Suffolk County Council gave an
entertaining and informative presentation on the Health Walks available in Suffolk.
She outlined the benefits of the walks for people with long-term conditions, both
physically and mentally.
The talk included details on equipment, clothing, and safety considerations that the
leaders build into each walk.
Details of the walk programmes are @ info@livewellsuffolk.org.uk ,
http://livewellsuffolk.org.uk/healthwalks and tel: 01473 22 92 92.
It was pointed out that two members of our group are listed in the national magazine
as contact points for Suffolk and they maintain a library of information. They are:
Sheila Fincham
Shane Norton
and their details are in the back of the magazine.
The date of the next county meeting will be Sunday, 16 Sept 1400 @ the Cedars
Hotel, Stowmarket.
The meeting was closed at 1545.